I am not sure what is going on. My mom had pneumonia, was given levaquin, ten days later she couldn't swallow or walk. Now, 1 1/2 months later and 2 more antibiotics (Rocephrin and Doxycycline) later, she is able to swallow, pnuemonia is better, she is getting physical therapy, but she has huge ups and downs. She is eating almost nothing. She has been started on Hi-Cal. When I get there in the morning she seems to be fairly awake and able to walk at least 50 feet in physical therapy, a couple of hours later, she is babbling and has trouble sipping through a straw. Every time I try to get her attention by saying, "Hi mom" exuberantly, she acts like I just got there - suprised to see me. During this brief moment of attention, I am able to get some of her hi-cal in her. Then a minute later, she is slumped in her chair. Two months ago, I would blame this on off time, but it doesn't seem to fall when she is off her medicine. Actually her Stalevo doesn't seem to be making much of a difference. I have decided against a feeding tube based on her requests, and I still have the hope that the Hi-Cal will give her enough energy to eventually eat more than three or four bites of real food. Since January, her weight has gone from 154 to 126. The doctor in the hospital and the doctor at the nursing home have both mentioned hospice as a possibility. Today at 12:00, she said that she needed to go to the bathroom. The CNA and I took her and we almost didn't make it (it came really close to someone ending up on the floor). She must have had a blood pressure drop. She couldn't move her feet, started bending over, and almost hit her head on the bar next to the toilet. Am I delusional in thinking she might get better? In denial? Any suggestions?

I don't think she will improve much but she may be in the present state for awhile.

Sounds like you are experiencing the "cognitive fluctuations" that can come with LBD. There also seem to be physical fluctuations as well that are distinct from the off-times. (I'm surprised the facility is still trying PT. I would think she's hit the end of the Medicare PT benefits.)

Orthostatic hypotension can be a part of LBD. It's a dangerous and disabling symptom.

When you've reached the end of the PT benefits, I'd again strongly encourage you to place your mom on hospice. It doesn't mean she's required to die within 6 months.

Wed Apr 18, 2012 6:18 pm

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: Am I in Denial?

Sadly, it sounds to me like typical Lewy with its inherent fluctuations. I agree that Hospice is a good idea if she qualifies.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Wed Apr 18, 2012 7:06 pm

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: Am I in Denial?

Based on my experience I'd say "yes" to your questions. If the drs. think she may be hospice-ready, then I'd certainly get hospice in there tomorrow to do an evaluation and to give you info. about what happens in a person's final months. If she is in end stage, force feeding is very hard on the body, according to the hospice info. I was given and any reading I've done about the subject. Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Wed Apr 18, 2012 7:41 pm

Marie11

Joined: Fri Oct 28, 2011 1:31 pmPosts: 29

Re: Am I in Denial?

I am having a really hard time accepting the hospice thing. We just went to Disney World in December. It's not like she rode all the rides although she did ride "Soarin'" and loved it. Yes, she was confused and dosed (a lot) but she enjoyed being there and seeing the shows and the lights and eating at the restaurants. Could we really be ready for hospice so quickly? It just doesn't seem like it could happen overnight like that. It seems that now that she is off of the debilitating antibiotics she should come back to her baseline.

Wed Apr 18, 2012 8:06 pm

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: Am I in Denial?

Many of our LOs lost abilities literally overnight. My dad - no walking, no use of arms, barely able to move his legs, lying on the floor almost paralyzed, incoherent, delusional when his speech was able to be understood, double incontinence, no ADLs whatsoever, most executive function gone, etc. Two weeks earlier he had been living by himself, still driving. There are several others on here whose LOs lost abilities precipitously also. For about 3 weeks with intense therapy he was able to walk some with a walker, and sort of feed himself. Couldn't dress himself, shave himself, needed to wear adult diapers, etc. Then he declined from there over 18 mo. His declines generally were very sudden and very noticeable. In my experience, drs. don't recommend hospice evaluations just for the heck of it, and hospice will be a great help to all of you when your LO becomes eligible. Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Wed Apr 18, 2012 8:40 pm

JeanneG

Joined: Fri Dec 31, 2010 3:07 pmPosts: 1039Location: Minnesota

Re: Am I in Denial?

Marie, I don't think you are in denial. I think you are surprised, probably stunned, by the progress of this terrible disease.

Is it possible to be enjoying DisneyWorld in December and entering Hospice in April? Yes, sadly, it is possible. As others have said from their own experience, a permanent drastic decline can happen very quickly.

It is also possible that a stubborn illness such as your mom has been fighting causes a huge decline that may not be permanent. It is possible that she could recover back to or near to baseline. This can take a long time. When Coy had bleeding ulcer and again when he was hospitalized with pneumonia he took a big decline. Both times he returned to baseline. I don't know if this is a common experience, but it is valid and true in our case.

I'm probably in the minority on this, but I don't think I'd call in hospice just yet. I'd work a little longer on trying to help her recover from her illnesses. The weight loss is not a good sign, and she may well qualify for hospice. I wouldn't put it off forever, but I wouldn't be ready for it yet, in your situation.

Whatever you decide, know that you are doing your best, and that is all we can expect of ourselves.

_________________Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

If you have MDs telling you your mom qualifies for hospice, then in the opinion of two MDs your mother could die in 6 months. Why not get the extra care and attention that hospice provides? It doesn't increase the likelihood that your mother will die.

Thu Apr 19, 2012 5:05 am

Marie11

Joined: Fri Oct 28, 2011 1:31 pmPosts: 29

Re: Am I in Denial?

I have been thinking about it, and this is why I haven't looked into it yet. I am still hoping that she gets better. I feel that if I or they call hospice that the nursing home will stop trying to help her get better (physical therapy, Hi-cal supplements, etc.).

Thu Apr 19, 2012 8:51 am

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: Am I in Denial?

I think your fears about the nursing home are unfounded. They would still perform restorative therapy which is a quality of life measure, doing range of motion, stretching, etc. exercises, walking if she is able, etc. And they would still give her high calorie drinks. Certain interventions and hospitalizations would not be done [you need to ask Hospice which ones] but remember: You can always discontinue Hospice at any time!! My uncle was put on Hospice a few months ago [advanced prostate cancer] and he rebounded so the family took him off. He can go back on Hospice if things change.

If he's in a nursing home [as opposed to an assisted living facility] there may not be quite as many advantages to Hospice but it's still worth checking out.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Thu Apr 19, 2012 9:50 am

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: Am I in Denial?

Without all the data, I find it difficult to make an informed decision,

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

I suggested above that you put your mother on hospice once the PT benefits have run out. I assume at some point soon the physical therapists will stop treating your mother as she's likely not improving with the PT.

Can you discuss this issue with the social worker at the facility?

Thu Apr 19, 2012 11:09 am

JeanneG

Joined: Fri Dec 31, 2010 3:07 pmPosts: 1039Location: Minnesota

Re: Am I in Denial?

Robin is right, Marie, two doctors have suggested Hospice. If Coy's dementia doc (Boeve) and/or his knowledgable geriatrician suggested Hospice, I would take that seriously. But if his former PCP (from the time of his diagnosis) and/or the nursing home doctor (when he was in tcu after hospitalization) suggested it I would roll my eyes and disregard the advice. I think that many of us have discovered that when it comes to LBD, not all doctor opinions are created equal. Which is not to say that you shouldn't listen to the doctors who are talking to you -- I have no idea what they are like. My point is just that you are not obligated to act on their comments immediately.

Please let us know how things are going. And whatever you decide is "right."

_________________Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Most families are in denial before putting their family member on hospice. It's one of the hardest things a family will do is accept that their loved one may be gone in a few days, weeks, months. Many families don't even tell their loved one they are put on hospice and instruct the hospice agency not to use the H word. I don't know if that's good or bad but this approach helps many cope with the decision.

Thu Apr 19, 2012 4:49 pm

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: Am I in Denial?

I was eager to get my dad additional help through hospice. It was obvious that he was not going to get any better and was noticeably worse week by week, so we tried several times and he didn't pass the hospice criteria. It was a blessing when they accepted him because he got more frequent care and additional help with the pressure sores once hospice was involved. And, the info. they gave us family members helped us understand where he was (roughly) in the final months. Once I read about how people's bodies begin preparing them for the end, I looked back on all the changes he'd had in the months where hospice wasn't involved and was even more perplexed why he wasn't accepted at first. (significant decrease in weight, limited eating & drinking, favorite foods tasted like poison, withdrawing from social interactions much more than he had been, etc.) I only wish he'd been able to get their services sooner. He really loved the hospice nurse and the aids.

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

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